'The cancer has spread to my brain and I'm facing the fact that I could be out of time, so I need to end my Bowel Warrior column and put my family first'
Beth Purvis, aka Bowel Warrior, from Elsenham, who will be 41 in June, started writing for the Bishop's Stortford Independent, as a married mother of two living with stage 4 cancer, in May 2019...
I started radiotherapy treatment on my lungs a few weeks ago and things have been pretty tough. I haven’t managed to get any energy together and write.
I thought it was just the treatment that was wiping me out; they did warn me it would make me tired. But it turns out, after an unplanned trip to Addenbrooke's Hospital in Cambridge and a few scans, that there has been a bit more to my feeling totally rubbish. The cancer has spread to my brain.
The good news is that there is treatment I can have – however, as always, there are no guarantees that it will be effective.
I have sort of been here before with my lungs, but this time it feels a lot more gloomy. I have been really lucky, I have had so much more time than expected so far. Now I am facing the fact that I really could be running out of time, although of course I am still hoping for miracles. I’m not giving up yet, but I do need to be realistic.
I’ve done a fair bit of crying and there will be more to come, I am sure. Now, though, I am trying to focus on the practical.
Death admin, my will and power of attorney etc, I did that a few years ago. That’s a box ticked already. You might think that I’m well organised and needn’t worry – you would be wrong, there is so much to do.
I have realised there are so many accounts in my name that we use as a family – social media, streaming, mobile phones, vehicles – that legally belong to me; utilities, financial accounts that are attached to me... the list is endless.
In our house I am the general organiser and administrator, bills and payments get made because I action them. I am currently compiling my husband Richard a spreadsheet of what needs to happen when, the obvious money stuff and silly things like the cut-off date for booking the timeshare to make sure an August slot is available and who to email to get that slot. You wouldn’t believe the amount of things you just do without thinking about it.
Then there is the emotional admin. I need to make sure I leave as much of me for my husband and children to connect to when I am gone. Letter writing, video recording and simply spending as much time as possible with them while I still can and for us to both laugh and cry together. This is most important. This is what I will be focusing on going forward. My family is my priority.
I still have so much I want to tell my children, so much I want to share. They are going to need so much guidance that I should be there to provide.
My children should not be having to deal with this, and as their mum it is my job to protect them and guide them, and make what will be impossibly tough a tiny bit easier if I can.
I can’t possibly dump on them all the millions of words they will need to hear. I don’t know which of those words they might need, I don’t know what situations they will come up against in the future. I don’t know which information will be totally useless to them.
I may have to settle for making sure they know they are loved, they know who to go to for advice and hoping I have done a good enough job of the early years to set them on the right path to happiness in life. All I want for my children is for them to have happy lives.
This may be the last time I write. The reasons I started writing about living with stage 4 cancer were many. Mainly, though, I wanted to help others in my shoes not to feel so alone, to know there were others experiencing the same things and also to raise awareness – particularly of bowel cancer in younger people.
Bowel cancer is still considered an older person’s cancer but it is increasing in younger people and no one knows why. It also seems to be more aggressive in younger people. Bowel cancer is the fourth most common cancer and the second biggest cancer killer behind lung cancer.
I have campaigned with Bowel Cancer UK and pioneered a symptoms diary at https://www.bowelcanceruk.org.uk/about-bowel-cancer/our-publications/symptoms-diary. I have spoken to the media about my situation. Everything I have done speaking out is in the hope that I can help prevent others going through what I have and prevent other lives being lost too young to this cruel disease. If I am asked, and I can without taking away from my family, I will still help raise that awareness and help stop others dying.
I will continue to post briefly on my social media accounts from time to time if anyone wants to check in @bowelwarrior (Facebook, Twitter & Instagram), but right now my family has to be my focus so I am signing out on this column at least for now – although, you never know, miracles may happen, and I have beaten the odds before.
I will leave you with one last message: Know your body. If something does not feel right then get it checked, and don't be fobbed off. Trust your gut.